Emily was having her first severe epileptic seizure. It lasted 90 minutes.

The doctors at the UK hospital told Ms Lever that Emily most probably had a form of epilepsy she would grow out of, a misdiagnosis that could have drastically changed her life.

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By chance, a visiting neurologist suggested she may instead have a severe form of epilepsy called Dravet syndrome. He had just heard Melbourne University professor Ingrid Scheffer speak about the rare syndrome at a conference.

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Emily was tested, but her family was told she probably didn't have it and they should continue their plans to move to Melbourne.

Soon after they arrived they received a call saying she did have it. She was told she may not walk by the time she was four and could die by age eight.

Emily was sent to see Professor Scheffer, who was able to target treatment that has meant she has had fewer seizures and avoided severe disability.

Now, thanks to a new international classification system, developed by Professor Scheffer and published in the journal Epilepsia on Tuesday, epilepsy sufferers around the world, estimated to be about 50 million, have a much better chance of getting the right diagnosis and treatment.

The overhaul, the first since 1989, has given seizure types formal recognition and provides general practitioners with better information on epilepsy causes and its association with other disorders, such as autism. It also describes epilepsy types in plain language so patients and their families can understand.

"Epilepsy is a very complex group of diseases, with different risks and mortality rates for different types of seizures, and about one-third of people are not fully controlled with current medications," Professor Scheffer said.

"Given that most people are diagnosed at their local GP's office, it's absolutely critical that doctors have access to the latest understanding."

Whereas half of Dravet sufferers have severe intellectual disability, Emily, now aged nine, has been able to attend mainstream school where, although she is a few years behind developmentally, she has good social skills and takes part in activities.

Talking about Emily's condition is "raw", says Ms Lever, as she dissolves into tears.

Emily had her first seizure in eight months on Friday, after a swimming lesson and staying up 30 minutes past her bedtime tired her out.

As with when she was a baby, Ms Lever found her in the midst of a fit in her bed.